Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014.
A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer patient.

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Tuesday, 31 December 2013

After a rough and iffy patch there, Charlotte is home from the hospital and ringing in the New Year quietly at home. She will have nursing care there. She is, by reports, accepting and in good cheer if rather fuzzy on the details.

One note from brother, Tim, could be Charlotte's motto: that she is "very appreciative of the good things that happen."

Saturday, 28 December 2013

I have just had word from Charlotte's family that she is in hospital. It would be best, I understand, not to contact the family at this time as they are under strain and tired. I will post if I have further news.

Monday, 23 December 2013

Wrote to me yesterday to complain about my lack of blogging. He wanted to know my news and for me to keep him up to date, which seemed fair enough. I also had an email from Colleen that made me laugh out loud for ages. I also got a lovely email from L in the US. So I thought I would combine all three to give you an answer and see if it helped.

Firstly I am sitting Shiva for who I was and who I can never be again. This means I sit and mourn that which has gone and let others do everything for me for seven days. I quite like that idea - the lack of responsibility, the ability to concentrate on one's own grief, the time set aside to mourn.

Colleen's email was all about her quilt, did I like it? Did I hate it? Do I no longer want it? What? How? When? Why?

I love it and am awaiting instructions on how to hang it properly.

Dad, I hope this explains a bit, along with the arrival of C, the lymphodema nurse who has transformed our lives but given me a long list of things to do, four Drs appointments in the hospital and a lot of exercises etc for me to start. I am knackered. Absolutely knackered.

Wednesday, 18 December 2013

I took myself off some of my pills yesterday. They were some blood thinners and made me feel sick all the time. This is not helpful when trying to recover from this vile operation and all the related stress that goes with it.

I went to see Ms J and HWISO's new hero, Dr S, at the hospital. It was utterly exhausting and I came home after three hours shattered but utterly terrified by Ms J's dire blood clot predictions. So I took the pill and have consequently been wide awake feeling sick since 3.30 am. Sigh.

So what to do?

Dr S Miss J and HWISO want me to start training for a marathon and I just want to lie in bed all day talking to Laura on Skype.

Sunday, 15 December 2013

I have often said that hospital is not a good place to recover from a illness. The endless routines, 4 hourly obs, the lights, the other patients, the drama.

Returning home, I have obviously decided to "sleep it off". Hence why I managed a total of 4 hours actually awake yesterday. For those of you I promised to talk to or email or on whom (ModSquad) I fell asleep mid sentence, sorry.

Saturday, 14 December 2013

I was going to have the morning off blogging this morning but can't let Fiona Mary down so thought I would do a short mimble.

It is lovely to be home, in my own bed, having eaten delicious home cooked chicken casserole for supper. It is lovely to have my own loo. It is lovely to have my own cup of tea out of a china mug, not plastic, with biscuits, to eat when I want, to wander around without having to deal with fire doors. Oh the bliss.

The house looks so Christmassy. Loving what HWISO and Em have done. Really feeling a new phase of life is starting.

So Miss A says I can go home if I let "the boys" put in another couple of stitches to keep the drain in. The boys are her registrars and are grown up and lovely. Anyways, I agreed and after much impressive knowledge of hospital bedside equipment, (if you want the overhead light on full, switch button to "Off"position), new stitches,with the aid of local anawhatsit were put in.

I am too exhausted to get dressed just now and demonstrate my prowess with the Zimmer Frame to the physiotherapist so have retired to bed in a naked but for a sheet heap.

What is so refreshing is that after over two weeks of everyone being too frightened to prescribe aqueous cream for the skin rubbed raw by the left-over stitches, it was lovely the way Miss A gave instructions and didn't feel the need to over control.

Oh the joy of being home. Having had Em over on Wednesday, I then had a lovely hour with G yesterday, hearing about her life, her boyfriend and managing, even from my hospital bed, to fix her phone.

At the same time,HWISO and G had managed to find my dad wandering the corridors, whilst my stepmother was having an assessment for her suspected stroke. So he came up too and chatted away. It was slightly surreal.

Then Darling Christine came bearing choccies and smelliest and wondrous smiles in the afternoon. A tough session with Occupational Therapy resulted in a grump which was lightened by the arrival of Rebecca.

I credit Rebecca with starting the lymph draining from my hand a week ago when she came and massaged it. I said this to Miss A yesterday. Miss A did then point out I was lucky because any sudden changes in the amount of bodily fluid can kill you. So whenBex offered to bring her cream and massage my hand again I had to reluctantly say no. I explained why. She went into meltdown

So I have this MRSA right and need to shower every day with antibacterial stuff. This morning, I decided to get done early before either a) the hot water went on the blink again: or. B) all the peeps who are coming to see me this morning arrived.

I got myself undressed, found new Clothes, gathered a towel and then completely ran out of energy. I collapsed stark naked back into bed and after about 10 mins managed to cover my modesty and stop dry gulping. I had lost my call bell and felt way too humiliated to ask for any help. So I whimpered to myself for over an hour before someone stuck their head round to see how I was.

Of course the staff here were lovely and kind and listened to my fears about not being able to cope at home. I even plucked up enough courage to ask my breakfast lady to butter my toast, which she did willingly, unlike at Basildon.

I am still afraid (and would much rather have Tim, than any other person except HWISO looking after me) but your comments and love and support have bolstered me.

It has been a surreal 24 hours. So many lovely visits from my previous teams all over the hospital. The lovely sisters on the two surgical wards I'm on now, the MacMillian team, the Breast Care team,, Dr W , the lovely Miss A, my surgeon, em on her way back from schools. In between, I slept I was totally exhausted.after my big "removal" day.

Jane wants me to go home tomorrow. I am petrified. I lost all confidence in my ability to care for myself whilst down in Basildon and have become very institutionalised over the past four weeks. I am utterly terrified.

Wednesday, 11 December 2013

I don't care that the West Suffolk is housed in a building well past it's use by date. Or that the paint is peeling and cracking. Or that the windows don't shut properly. Or that I am once again in a side ward on my own. Or that the day is conducted to a background of drilling and hammering as the workmen set to on the roof above.

To be back within ten minutes of home brings indescribable comfort, knowing that I won't die in Pylonia, as my brothers call it. (The main farming crop of Essex being pylons).

It was an interesting experience being in a modern specialist, purpose built hospital but at the end of it all, my overwhelming impression is that of a hospital run along 1984 lines, not a member of our beloved NHS.

To be back among friends, including KL, is joy.

Last but not least a huge thank you to Suzie, who broke down the impenetrable walls of CTC yesterday to deliver much needed food, cheer and normality. Love you.

Just after being given the devastating news that I wasn't leaving for home just yet, Mrs B (of moving house fame) and Mrs G arrived to help "sort this out".

Whilst Ali tackled the nurses about Mrsa, what it meant, why I wasn't being isolated and being left to wander around a surgical ward, Jayne soothed Chrissy on the phone, soothed me and fed me Courgette and Lemon cake.

So it's December, one of our coldest months. I know I am in hospital and should be kept warm but should I be lying here, with the window open, only a thin sheet for cover and be sweating?

No, of course not but welcome to the Basildon CTC purpose built hospital - opened by Gordon Brown, where there is no WiFi, the plugs are in the wrong place, there is a lack of basic equipment but the lights are good enough to operate under in the bedrooms. I could go on but need to wipe my brow, as can hardly see for the steam....

Meanwhile, let's continue to underpay our nurses, feed our patients slop (42p per day is the budget) and overpay for light bulbs that are unnecessary. The CTC looks good, even though painted in the generic NHS colours. The staff are still over and under valued. The plaque in the front celebrating Gordon's visit to open the centre obviously gets polished every day.

"internet lockdown as things look increasingly promising for a bid for home and freedom today. Nothing set in stone yet (and if no joy, it may be that there is another long day in Basildon to contemplate tomorrow), but the nurses are on side, notes are being called for from all sides, HWISO is armed and more than willing to look after her at home and she is hopeful and cheerful as a result"

Are you, as I am, imagining Charlotte sitting in her uncomfortable hospital chair facing the door: packed bag at her feet, "teenage" iPod logged off and put away, tapping the fingers of her good hand as she waits for someone to come in the room to say "you're free, Mrs. Bevan."

Colleen asked me to blog about my hand, so here goes. It is still very swollen and tingly. I still have a drain in. It still has little feeling in it BUT it is getting better.

Although incredibly heavy, I have found away to arrange it when in bed to keep it up and, hopefully, drain more lymph off. It is lighter although awkward and unwieldy. I am hoping to get back to the West Suffolk and my specialist nurse there. I also find it easier to use at home. I have a chair I can sit in and am able to control my own medication, unlike here where I have been left for up to an hour whilst my nurse was involved with another patient. Not fun. Not pain management. Not likely to inspire confidence.

As for the hand, I have noticed two different reactions. Half the medical staff are gentle, stroke it, tell me I am doing well and encourage me. The other half regard it with disdain and something akin to repulsion.

I am struggling on learning to do up my shirt wrong handed and one handed, which makes life tough.

Colleen asked me to blog about my hand, so here goes. It is still very swollen and tingly. I still have a drain in. It still has little feeling in it BUT it is getting better.

Although incredibly heavy, I have found away to arrange it when in bed to keep it up and, hopefully, drain more lymph off. It is lighter although awkward and unwieldy. I am hoping to get back to the West Suffolk and my specialist nurse there. I also find it easier to use at home. I have a chair I can sit in and am able to control my own medication, unlike here where I have been left for up to an hour whilst my nurse was involved with another patient. Not fun. Not pain management. Not likely to inspire confidence.

As for the hand, I have noticed two different reactions. Half the medical staff are gentle, stroke it, tell me I am doing well and encourage me. The other half regard it with disdain and something akin to repulsion.

I am struggling on learning to do up my shirt wrong handed and one handed, which makes life tough.

If you have run out of veins to have blood drawn from in all the usual places and your feet look like the only option, please find yourself a young, enthusiastic doctor who thinks that watching videos on You tube whilst downing Oramorph, is quite acceptable behaviour for 11am on a Sunday and is Happy to discuss the merits of Primark vs Tescos socks.

So I have a new shoulder and no tummy - neither through choice and neither recommended. The surgeons have done an extraordinary job. It all feels rather Channel 4 before and after to be honest. The skin from my tummy has to be checked every two hours to see that it is "taking" and not withering away and I still have a drain, under my arm, which I hope will be removed tomorrow.

I have lots of hopes for tomorrow, most of which will be dashed I suspect. But I cling onto the tiny sliver of hope that I may be a step nearer to home. Meanwhile I munch my way through Bex's biscuits and an early morning cup of tea.

Dying is bloody hard. Trying to live out your dying days as you want seems even harder, as darling Tim said to me last night.

I realised how depressed I was yesterday when I spent the whole of HWISO's visit crying harder than I had been crying for the rest of the day. He bought Colleen's beautiful quilt with him (various issues with customs) but I was too sad to open it and didn't want it tainted by this evil place.

I begged and cried at him to take me home. He left in a worse state than me. It was a horrid day.

I don't understand why I am here. I just want to go home, back to the West Suffolk and far away from the surgeon who was callous enough to try and tell me what he would do in my position. He has no idea and had given it little thought or consideration. It was unkind.

He has also undermined my confidence in ability to cope at home with just HWISO. Just now I am very angry. But not as angry as I am sad.

I want to see my quilt in the muted light of home, not reflected off the stark white and pea mint soup colours of this room. And not through a positive waterfall of tears.

Friday, 6 December 2013

Having banned HWISO from coming to see me under any circumstances, so I could wallow in misery and self-inflicted loneliness, he turned up as usual about 3.30 pm having made an appointment to meet my surgeon and talk about taking me home.

It was an interesting meeting, the upshot of which is that my surgeon never wants to see me again once I leave (half of me proud:half deeply offended) so he wants me to be really well when I leave.

He did say that this operation may lengthen my life by a few months. It also may not, if I get some kind of infection.

They have done an amazing job, as Erica rightly said. The surgeon is, however, the jailor with the key to my freedom. So I shall continue to treat him with the abject suspicion he deserves until I am home. Meanwhile, HWISO won various freedoms for me, whilst discussing driving in the snow, including me being allowed to get off the wards. Hurrah.

However, no going home till Monday. Sigh. Another weekend in Basildon looms. I can't wait for my take away with Ali but will have to put it off for another week.

I shall ring darling Erica who has making homemade Marron Glacee between blogs and while away a morning with her, whilst seeing if anyone can get here through the snow and wind.

Thursday, 5 December 2013

I got a phone call from Charlotte – she was
feeling well enough to chat and she was up for a short visit from a friend. And she is, as always, fabulous, and her
smile greets you from the door and lights up the room.

The last few weeks have been grim; you can
tell, by some of what she tells and by a bit of what you can just imagine
– pain and suffering is not good for the soul no matter how great the promise
of operative redemption or how practiced and heartfelt the care. Charlotte’s operation scars are, however,
beautifully crafted – the surgeons have done a wondrous job, and they have made
an incredible difference; but (and we knew there would be a but) there is post
op recovery, and an arm that is still a work in progress to relieve the
swelling and with scope, and hope, for further improvement.

Charlotte has not been altogether happy –
not, I don’t believe, because of the hospital or its staff, who I can testify
from having met some of them yesterday, are both state of the art and very caring,
but because she has been having a rough time with this part of treatment,
necessary as it has been. Team Charlotte
is doing a great job, but hospital is hospital – it has its routines and its
tedium, and being prodded and poked and hooked up and given instructions and
kept in one place is not really fun – especially when you are unwell.

Charlotte has a lovely room in a light and
airy ward overlooking farmland (not quite comparable with her own bedroom view,
admittedly, but, all things considered, not at all bad). Her bed is a joy to behold – it all but sings
and dances as it moves its pockets of air around to keep a patient more
comfortable than is probably humanly possibly.
Admittedly, the NHS chair next to it is the ugliest of the breed that I
have ever seen, and I would not want to spend a great deal of time in its
company either, but I suppose it does a job, after a fashion, albeit with a lot
less panache and comfort than its more glamorous confrère, the bed. Charlotte’s ward is practically space age –
it occupies a “zone” rather than an old-fashioned floor number - but some of the
neighbours, more familiarly, pop by to have a chat (and there is a code -
knocking on the bathroom wall signifies if someone is “in” to callers). The Basildon warmth, felt from the moment of
arrival when bonding with fellow car park hopefuls in the miniscule car park,
is enough to warm the cockles, and a far cry from the cat and mouse game played
in my local hospital as we stalk spaces and attempt to outwit each other in
getting to them first. Parking is,
Charlotte assures, the first talking point of anyone who comes to visit. Followed by tomatoes (about which no more,
please, says Charlotte).

We talked about plans afoot to get Charlotte
“sprung” to Suffolk – hospital if necessary, home if at all possible - but, in
any case, home turf to make it easier on day release and close family and
further planning. We talked of the
relief that she is feeling better - better than the day before or the one
before that - and we giggled about many things (not just the parking and the
fact that she is now a published
author). I won’t divulge all our subjects
but we (Charlotte, an(other) elegant sister in law, and I) covered a fair
amount of ground, starting with her surgeon’s sense of humour and ranging from
the refit of crittal windows with unforeseeable consequences, through the
inadvisability of adopting Inspector Clouseau accents for spoken French GCSE
exams, and the perils of hiring too small cars in Italy (and how one chooses a
driver in such circumstances), to the dusting down of the Christmas
decorations. We gasped and marvelled and
laughed and chatted, as is our wont, and it was a joy.

I left much earlier than I wanted – not
only frightened of tiring Charlotte - who seemed on top form and verging on
indefatigable (although I know that she isn’t) - but also of approaching the
Dartford Bridge, as a Dartford crossing virgin, once darkness had fallen. Charlotte, if you are reading, not only is
the bridge not even slightly difficult to navigate, the sun setting on the far
side of it as the lights from the crossing traffic snaked over it was a beauty
to behold – if only my fingers had not been quite so tightly gripped to the
steering wheel, I might have been able to capture a picture of it for you. All in all, a wonderful day - and Charlotte is
doing great.

So an up and down day. Such bad back ache that I had to have oramorph at lunch time. I fell asleep and woke up to the delightful face of Bundy on her way home from seeing her mum. She was shortly followed by Erica bearing delicious cakes in a lovely Green box. Such joy.

We giggled and laughed and talked about holidays and children. It did me so much good.

HWISO didn't come today. A well deserved day off for him. When I spoke to him this evening, I realised I can't bear him coming tomorrow if I can't leave with him.

Wednesday, 4 December 2013

Back at ya. Yesterday (3 December) was the horridest day evah. With all the dignity I could possibly muster, I passed out on the commode and went tumbling to the floor in front of the whole ward. A very undignified adventure with a green and yellow hoist, I was returned to bed in a heap of misery.

By the time Aimee arrived on the ward, I was a pile of self-pitying misery. Luckily for everyone Aimee arrived early and flew through the ward like Marry Poppins with all her magic. She sorted out stuff like my medication so I wasn't permanently tied to my bed on a drip. She got me out of bed and into a chair which was great for when Alex and Mickey arrived but may have overdone it as my back is crap this morning and gave me gyp all night. She cleaned the old plasters off my hands and arms, sorted out one line that had been sewn in crooked, got me mobile and lightened my day.

She made me feel that life was possible, rather than looking forward to nothing but death. And all from a little pocket rocket.

Which put in a better place for the new attack from the Consultant who shall not be named. He has decided that I a not trying hard enough to get better and should be instantly transferred to the West Suffolk. Whilst I agree about the transfer perhaps hwsnbn should look at the way his team is run (understaffing, agency nurses, crappy essential equipment) and try to understand that nursing , rather than production line,one size fits all, might make his statistics even more impressive and he won't have to threaten people like me

Anyways, it was lovely to see my visitors, lovely to have a day with Aimee and even better to snarl at the Consultant. Everyone needs a bad guy.

I hate the world today. I went to sleep crying because I was still here a and woke two hours later still crying. Because I wasn't waking from a nightmare.

HWISO told me yesterday that he just couldn't cope with me at home. I know he didn't really mean it and I know my girls haven't been to see me because it is all too scary and horrid and I beg them to stay away but I miss them so.

Being here on my own so much has really opened the floodgates and I have cried a lot. I cried just now when I got an email from Alex saying she was coming today. I cried for two hours when HWISO left Yesterday as I knew I wouldn't see him for two days

The 1st December and I'm in Basildon, in a ward with a madman. One who thinks of nothing of turning on the Football Channel at 3am or deciding to hold a long conversation whilst on the commode. He keeps asking if I feel as lousy as him. How would I know? I find it hard to stay awake, my love affair with morphine is well and truly over and anyone who voluntarily puts themselves up for this kind of pain for vanity is schoopid. Really schoopid.

It takes all sorts, I suppose and HWISO and Tim have emerged from this experience closer than ever but twice as batty!!

As for me, you will not be surprised to know I have stood up to the class bully, fallen even more in love with Dr R and devised away to get back to the West Suffolk and the team there. The Registrar said he could quite understand why I wanted to go back there - thanks Sue H - and how heartening it was to ring a. Hospital where everyone knew who the patient was